Introduction to Linda and colton "My son was diagnosed with E at the age of 1, we were told first that he wouldn’t survive, then we were told he would never walk or talk... Flash forward to today, I just wanted to share that with support, lots of hard work and his determination, he is a freshman in college and a collegiate athlete (lacrosse). He’ll live with his brain injury the rest of his life, but just wanted to share that there is hope, there is support and there are miracles." ~Linda Fereira, a long-time Inspire.com member Encephalitis411's origins go back well over a decade, to when founders Becky Dennis and Bob Morris met while serving on the board of Encephalitis Global (which later became a part of Encephalitis411). Back then, there were fewer resources and ways to meet others in the encephalitis community. Most met through the Inspire.com forum, which has a rich history of conversation and knowledge that can still be accessed today. Linda, a long-time community member who some may recognize from Inspire.com, recently caught up with us to provide an update on her son. For anyone looking for hope and inspiration, this is it! It's not too often that we get updates from those who were active in the community's earliest days, which makes her uplifting testimony all the more memorable. We are so proud of Colton and hope you'll join us in celebrating his successes by reading his story below. a testimony years in the making |
| Things rapidly changed overnight as Colton began to have seizures and fell into a coma. I rushed to the hospital that next morning only to be met by my husband and our pastor. The doctors had told my husband that they didn’t expect Colton to survive and that we should begin planning for his funeral. |  |
He was moved to the PICU and hooked up to monitors and had so many tests run. Days into this as he held on, it was finally determined that he had encephalitis. Possible cause, his chickenpox vaccine. He remained in a coma for almost a week. We were told that if he survived he would never walk or talk. After 10 days he woke from the coma. He was up, he was walking and playing. He did need to relearn things, such as walking and feeding himself with things like banana pieces and such.
 | We were sent home on seizure medication, visits from the Center for Disease Control and Prevention, and in-home occupational and physical therapy. They worked on his motor skills and his speech. He seemed to be recovering at a rapid pace and was soon running and jumping and doing all the things that he had done before falling sick. After six months he was off all medications. Over the next few years, he seemed to be a healthy, happy toddler. |
As he turned five and we began to prepare him for school we noticed a few things such as his not being able to tie his shoes or button his clothes, and often he would tell us “I forgot” when things we asked him to do were not done. None of this alarmed us, after all, what child doesn’t tell you they forgot when they get sidetracked while playing, etc?
His kindergarten and first-grade teachers noticed things that caused the concern. They would tell us that Colton would pay attention to things that were being said, but would often stare at his desk not being able to comprehend what he needed to do. He was struggling to learn to read. They suggested we get him tested.
Tests showed that Colton had damage to an area of his brain that caused short-term memory loss. He also had no feeling in his fingertips, which solved the problem of why he couldn’t button his clothes or tie his shoes. He actually tested so low in school that they suggested we place him in Special Education. We refused.
His kindergarten and first-grade teachers noticed things that caused the concern. They would tell us that Colton would pay attention to things that were being said, but would often stare at his desk not being able to comprehend what he needed to do. He was struggling to learn to read. They suggested we get him tested.
Tests showed that Colton had damage to an area of his brain that caused short-term memory loss. He also had no feeling in his fingertips, which solved the problem of why he couldn’t button his clothes or tie his shoes. He actually tested so low in school that they suggested we place him in Special Education. We refused.
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We got tutors, used horse therapy, and continued to help him in any way we could to keep him moving forward. Slowly he made progress and we as a family learned to deal with his memory loss issues.
Colton went on to make the honor roll through middle school. He participated in different sports, including baseball, wrestling, soccer, football and finally lacrosse. His playing lacrosse led to him being offered a position on a college team and fulfilling his dream of being a college athlete.
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Colton will live with his short-term memory loss for the rest of his life. He will also continue to have to work with the lack of feeling in his fingertips. He has never let either of these stand in his way. Most people who meet him have no idea that there ever was or is a problem. We couldn’t be more grateful for his life. Never will I forget the feeling of despair that I felt that day they told us to prepare for his funeral, nor will I take for granted the life he has gone on to live.
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Encephalitis took many things from his childhood, but in his journey to overcome it, Colton has become a story of strength and survival.
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‘Tis the season for parties, get-togethers, Christmas concerts, work socials, school performances, and a range of other holiday festivities.
Great, you might be thinking. Here comes another thing to add to the calendar before the year is over.
But this is one invitation you don’t have to spend hours preparing for. In fact, your presence is not even requested.
You can simply let your hair down, throw on your comfy pajamas, sip a warm tea, curl up under a warm blanket, and join the club of us who could use a reason to slow down this holiday season.
As the year draws to a close, we at Encephalitis411 invite you to view Fighting Encephalitis Head On!, a short video that features a few stories from our community.
As you watch, take a moment to step back from the hustle and bustle of the year and reflect on the things that matter most to you.
Great, you might be thinking. Here comes another thing to add to the calendar before the year is over.
But this is one invitation you don’t have to spend hours preparing for. In fact, your presence is not even requested.
You can simply let your hair down, throw on your comfy pajamas, sip a warm tea, curl up under a warm blanket, and join the club of us who could use a reason to slow down this holiday season.
As the year draws to a close, we at Encephalitis411 invite you to view Fighting Encephalitis Head On!, a short video that features a few stories from our community.
As you watch, take a moment to step back from the hustle and bustle of the year and reflect on the things that matter most to you.
Fighting Encephalitis Head On!
For many of us, health, family, and friendships top the list of things we cherish most. Yet these are often the areas that become destabilized most for those who are impacted by encephalitis. Every day we support and advocate for individuals experiencing the devastating physical, economic, and psychosocial consequences of encephalitis.
Next year will be no different. Looking ahead to 2023, 20,000 people in the U.S alone will be diagnosed with encephalitis. That’s a new town of people who will be unexpectedly faced with the harsh realities of fighting to get care for a rare disease that is frequently misdiagnosed, has no cure, is poorly understood by the medical community, and forever changes the lives of those it touches.
And they’re going to need our support.
We know that many are facing financial hardship during these challenging economic times. Further still, some are struggling under the weight of medical debt due to the lack of FDA-approved medications to treat encephalitis, and the numerous barriers to insurance coverage for critical rehabilitative therapies.
That’s why we at Encephalitis411 strive to keep our services 100% free. We are honoured to support patients, caregivers, medical providers, and other community members during their critical times of need.
But for those in more fortunate circumstances, we would appreciate your support. Please consider making a tax deductible donation before the end of the year, to enable us to continue these vital services for those impacted by encephalitis.
Next year will be no different. Looking ahead to 2023, 20,000 people in the U.S alone will be diagnosed with encephalitis. That’s a new town of people who will be unexpectedly faced with the harsh realities of fighting to get care for a rare disease that is frequently misdiagnosed, has no cure, is poorly understood by the medical community, and forever changes the lives of those it touches.
And they’re going to need our support.
We know that many are facing financial hardship during these challenging economic times. Further still, some are struggling under the weight of medical debt due to the lack of FDA-approved medications to treat encephalitis, and the numerous barriers to insurance coverage for critical rehabilitative therapies.
That’s why we at Encephalitis411 strive to keep our services 100% free. We are honoured to support patients, caregivers, medical providers, and other community members during their critical times of need.
But for those in more fortunate circumstances, we would appreciate your support. Please consider making a tax deductible donation before the end of the year, to enable us to continue these vital services for those impacted by encephalitis.
other ways to give
- Behind on your holiday gift shopping? Make a charitable donation in the name of your gift recipient(s). On the donation page you can select “Make this a Tribute Donation” and customize an e-card that will be sent to your gift recipient from Encephalitis411.
- Hard to shop for or already have everything you need? Set up a personal Facebook fundraiser for Encephalitis411. It’s a win-win solution for those who struggle to answer the question, “What do you want for Christmas this year?” For step-by-step instructions on how to set up a Facebook fundraiser, visit this page.
- Want to help raise awareness? Browse our Encephalitis411 merchandise and pick out some items that can be used at school, at the office, or out running errands.
- Ordering from Amazon? Use our Amazon Smile link to support Encephalitis411. A portion of every purchase will be donated to our organization, at no additional cost to you.
We appreciate each and every one of you who has been a part of our community this year. Thank you for your support and happy holidays from all of us at Encephalitis411!
"I’ve relearned to walk, talk, and see, with lots in between. I’d love to get my story out there.” ~Elissa Campbell, 2019 viral encephalitis and viral meningitis survivor
Encephalitis411 first met Elissa when she signed up to Wipe Out Encephalitis during this year’s Nicole’s Challenge: The Walk to Cure Encephalitis. We’re proud to have her as part of the Encephalitis411 community; and to help her celebrate how far she’s come, we’re sharing her story on the 3 year anniversary since her medical journey began.
Please find Elissa’s words below and join us in celebrating her strength, courage, and positive spirit.
Please find Elissa’s words below and join us in celebrating her strength, courage, and positive spirit.
2019: The beginning
On November 14, 2019, I was seen in the Northside Hospital emergency room in Cumming, Georgia for dizziness. Due to my work travel for the last 5 weeks, it was determined to be vertigo and I was released. I did vertigo relief exercises and acupuncture twice to try to help.
On 11/17/2019, my husband drove me back to the acupuncturist as my symptoms had worsened. As we left, he had to carry me as I could no longer walk and my speech was severely slurred. Thankfully, he took me to the hospital again and this time I was admitted.
This is where my journey to finding answers and healing began.
By 11/19/2019, I had 3 MRI scans, 2 of them with contrast. I was started on antibiotics to throw anything at whatever this was to help. My rounding neurologist could not find anything with the results of the MRIs and bloodwork. My symptoms worsened as now I could not walk, talk, see, or keep food down.
On 11/20/2019, my rounding Infectious Disease (ID) physician insisted on a lumbar puncture (LP) in a further attempt to find answers. She started me on intravenous immune globulin (IVIG) also. This was a 5 day infusion that was administered along with antibiotics. My husband, daughters, and sisters sat around the clock with me to assist in helping me get up for basic needs. I had to be assisted in walking, eating, using the restroom and eventually showering. I was poked and prodded for daily bloodwork and more MRIs (9 in total) to try to see anything.
By 11/27/2019, results from the LP and MRI finally resulted in the diagnosis of viral encephalitis that settled in the mid brain and brain stem, viral meningitis, and to top it off, IgG (old) antibodies of Lyme disease. It was a go big or go home scenario. The viruses debilitated me and the Lyme slowed my ability to recover.
11/28/2019 was Thanksgiving. A ton to be thankful for including finally being diagnosed, friends and family, medical staff, and my faith to carry me. My family enjoyed Thanksgiving dinner from my hospital room and I attempted (to no avail) to eat and keep it down.
On 11/29/2019, I had a double lumen PICC line (central venous catheter) put in my chest and orders to be moved to a local rehab facility (overnight stay) so I could receive constant occupational therapy (OT), physiotherapy (PT), and speech language pathology (SLP) therapy.
On 11/20/2019, my rounding Infectious Disease (ID) physician insisted on a lumbar puncture (LP) in a further attempt to find answers. She started me on intravenous immune globulin (IVIG) also. This was a 5 day infusion that was administered along with antibiotics. My husband, daughters, and sisters sat around the clock with me to assist in helping me get up for basic needs. I had to be assisted in walking, eating, using the restroom and eventually showering. I was poked and prodded for daily bloodwork and more MRIs (9 in total) to try to see anything.
By 11/27/2019, results from the LP and MRI finally resulted in the diagnosis of viral encephalitis that settled in the mid brain and brain stem, viral meningitis, and to top it off, IgG (old) antibodies of Lyme disease. It was a go big or go home scenario. The viruses debilitated me and the Lyme slowed my ability to recover.
11/28/2019 was Thanksgiving. A ton to be thankful for including finally being diagnosed, friends and family, medical staff, and my faith to carry me. My family enjoyed Thanksgiving dinner from my hospital room and I attempted (to no avail) to eat and keep it down.
On 11/29/2019, I had a double lumen PICC line (central venous catheter) put in my chest and orders to be moved to a local rehab facility (overnight stay) so I could receive constant occupational therapy (OT), physiotherapy (PT), and speech language pathology (SLP) therapy.
11/30/2019 was my first full day of rehab and they were able to get me to use a walker for 17 ft, even further with the wheelchair. This was a 3 week journey of relearning to do simple tasks of brushing teeth, using the restroom, showering, etc. Keeping food down was still a challenge. I continued daily infusions of antibiotics (Rocefin) and Heparin shots in the abdomen since I was still spending most of my time in bed.
12/20/2019 was the best early Christmas present—I got to come home! Mainly using the wheelchair but still learning the walker, and my husband caring for my needs with showering, etc.
12/20/2019 was the best early Christmas present—I got to come home! Mainly using the wheelchair but still learning the walker, and my husband caring for my needs with showering, etc.
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2020: Recovery at home
At home, I continued to have PT come to the house to work with me and my recovery. I was mainly under the care of my ID and having daily infusions of the antibiotic—for 13 weeks daily. I also had weekly visits at my ID office. At the same time, I began working with a Lyme Literate Doctor (LLMD) to combat the Lyme disease. He felt a treatment of Supportive Oligonucleotide Therapy (SOT) was worthwhile to pursue. It’s pretty fascinating to learn about. I have the sweetest family and friends who set up a GoFundMe page because it is a very costly therapy.
I also started boosting my gut health and immune system with Myer’s Cocktail infusions and other natural infusions of vitamins. Typically 2x weekly for about 6 months.
2/27/2020 I finished my 13 weeks of antibiotic infusions and had PICC line removed.
3/13/2020 I received my SOT infusion! This should and hopefully did stop the replication of cells infected with Lyme.
March was also the month I started showering myself. YAY!
By 5/2020, my speech had improved to nearly 100%, and I had stopped using my wheelchair and walker and graduated to a cane. I was very unsteady but determined to become independent. I also started attempting to drive to close by spots, including doc appts within 5 mins away. I was still doing PT and aquatic therapy.
On 9/25/2020 I graduated from PT. Not because I was great but because I had all of the tools to continue improving on my own.
I also returned to work full-time.
I also started boosting my gut health and immune system with Myer’s Cocktail infusions and other natural infusions of vitamins. Typically 2x weekly for about 6 months.
2/27/2020 I finished my 13 weeks of antibiotic infusions and had PICC line removed.
3/13/2020 I received my SOT infusion! This should and hopefully did stop the replication of cells infected with Lyme.
March was also the month I started showering myself. YAY!
By 5/2020, my speech had improved to nearly 100%, and I had stopped using my wheelchair and walker and graduated to a cane. I was very unsteady but determined to become independent. I also started attempting to drive to close by spots, including doc appts within 5 mins away. I was still doing PT and aquatic therapy.
On 9/25/2020 I graduated from PT. Not because I was great but because I had all of the tools to continue improving on my own.
I also returned to work full-time.
Facebook post - November 17, 2020:
One year ago I started a journey I never expected! Most know but some do not. What started out as thinking it was vertigo ended up with viral meningitis, encephalitis in the brain stem, and Lyme disease - mimicking a stroke. This left me unable to walk, talk, or see. I’m so thankful to be here a year later to tell my story and help anyone that may be in similar circumstances. So many blessings and so much love to spread! Thank you Colin J. Campbell, Catie Campbell, Evie Campbell, Lynn Walker Kirby, Steve Kirby, Stacey Walker Stanley, Michelle Simmons Payne, and Catriona Campbell for loving/caring for me like I never imagined! Thank you quarantine for allowing everyone to be with me during my recovery! My care took so many people - family, friends, healthcare heroes - and so much love. A year of infusions, many MRIs, PT, OT, and SLP dropped so many angels in my path! And I met the sweetest people to help with doors, elevators, and everything in between while trying to get the hang of a wheelchair, a walker, and unsteady walking. I was also able to participate in specialized treatment with everyone’s support. Since this, I have improved and I can almost walk without struggle. Through this all, God has carried me, guided me, made sure I’m cared for, and lit my road to recovery!
I’m not sure what the future holds nor do I know God’s use for this journey, but I’m certain I will know soon and proudly do as I’m led.
1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
One year ago I started a journey I never expected! Most know but some do not. What started out as thinking it was vertigo ended up with viral meningitis, encephalitis in the brain stem, and Lyme disease - mimicking a stroke. This left me unable to walk, talk, or see. I’m so thankful to be here a year later to tell my story and help anyone that may be in similar circumstances. So many blessings and so much love to spread! Thank you Colin J. Campbell, Catie Campbell, Evie Campbell, Lynn Walker Kirby, Steve Kirby, Stacey Walker Stanley, Michelle Simmons Payne, and Catriona Campbell for loving/caring for me like I never imagined! Thank you quarantine for allowing everyone to be with me during my recovery! My care took so many people - family, friends, healthcare heroes - and so much love. A year of infusions, many MRIs, PT, OT, and SLP dropped so many angels in my path! And I met the sweetest people to help with doors, elevators, and everything in between while trying to get the hang of a wheelchair, a walker, and unsteady walking. I was also able to participate in specialized treatment with everyone’s support. Since this, I have improved and I can almost walk without struggle. Through this all, God has carried me, guided me, made sure I’m cared for, and lit my road to recovery!
I’m not sure what the future holds nor do I know God’s use for this journey, but I’m certain I will know soon and proudly do as I’m led.
1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast.
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2021
2021 was a year that I continued to improve on stability and relearn functions not used daily. I realized I couldn’t sing or whistle. These and many more tasks just took focus and determination to relearn. It still remains very tiring. I have to tell my brain to tell my feet to step up for a curb or step over a puddle. Things just weren’t automatic for me.
2022
Fast forward to 1/10/2022, COVID positive and started losing motor skills. Neurologist stated this will always happen with any virus. WHAT???
I had the monoclonal antibody infusion and started back with PT. What I realized is PT continued to work on strength. That is one item I never lost. I lost the ability to do tasks. My brain could not tell my body what to do.
SO… I stopped PT and joined a gym: Orange Theory. This has been phenomenal!! If I can’t figure out an exercise, they give me modifications until I can figure them out.
I also have returned to my kinesiologist for help and sought inflammation reflexology technology (IRT) to take care of any inflammation remaining in my brain. I feel I am closer to being myself, recognizing I have a new normal.
This week marks my 3 years on this journey. (And my 100th Orange Theory class :)) I am so blessed to be here!
I had the monoclonal antibody infusion and started back with PT. What I realized is PT continued to work on strength. That is one item I never lost. I lost the ability to do tasks. My brain could not tell my body what to do.
SO… I stopped PT and joined a gym: Orange Theory. This has been phenomenal!! If I can’t figure out an exercise, they give me modifications until I can figure them out.
I also have returned to my kinesiologist for help and sought inflammation reflexology technology (IRT) to take care of any inflammation remaining in my brain. I feel I am closer to being myself, recognizing I have a new normal.
This week marks my 3 years on this journey. (And my 100th Orange Theory class :)) I am so blessed to be here!
What I've learned
What I have found out, I (and my family) am/are my own advocate(s). No one really knows what is going on in my brain as this is not a typical journey.
I wish I knew a “me” when this all started so I could know stuff to help. I do have a new brain with a TBI now.
I have taken all paths with medicine and have a healthy blend of western and eastern medicine. Sleep is my friend and if I need to stop a second, I do.
My mental health is so important and I listen to my head, my heart and my body.
My faith in God has given me the strength to move on. He has provided in all ways for my healing.
My family and friends are my cheerleaders and mean the world to me. I cannot thank them enough!
I wish I knew a “me” when this all started so I could know stuff to help. I do have a new brain with a TBI now.
I have taken all paths with medicine and have a healthy blend of western and eastern medicine. Sleep is my friend and if I need to stop a second, I do.
My mental health is so important and I listen to my head, my heart and my body.
My faith in God has given me the strength to move on. He has provided in all ways for my healing.
My family and friends are my cheerleaders and mean the world to me. I cannot thank them enough!
Proper care for rural patients in America poses a real challenge. Imagine suffering a brain injury and the nearest city of 100,000 residents or more is 3 hours away. I use this specific population because in the U.S., it almost always requires this size of city to fully represent the sufficient amount of healthcare disciplines required for complex illnesses, such as encephalitis, inflammation of the brain.
While we’re on the topic of hurricanes in the “cone of uncertainty,” let’s talk about how encephalitis (swelling of the brain) mimics this uncertainty.
Written February 21, 2016
Encephalitis. What a mouthful of a word. Ever heard of it? I hadn’t heard of this 12-letter word until 6 years ago. When the doctor said it, I kinda shrugged, thinking “thank God it wasn’t a stroke.” His expression changed as he explained that encephalitis is a form of brain injury, quite similar to a stroke.
“Huh?!” He broke down the word for me … encepha = brain and itis = swelling, therefore encepha + itis = swelling/inflammation of the brain.
It also = life-time change. When the brain is inflamed, all sorts of damage occurs, impairing memory, vision, balance, sleep, cognition, taste/smell, ability to concentrate and well, I could list another 200 residuals that encephalitis survivors report, including personality change.
Encephalitis. What a mouthful of a word. Ever heard of it? I hadn’t heard of this 12-letter word until 6 years ago. When the doctor said it, I kinda shrugged, thinking “thank God it wasn’t a stroke.” His expression changed as he explained that encephalitis is a form of brain injury, quite similar to a stroke.
“Huh?!” He broke down the word for me … encepha = brain and itis = swelling, therefore encepha + itis = swelling/inflammation of the brain.
It also = life-time change. When the brain is inflamed, all sorts of damage occurs, impairing memory, vision, balance, sleep, cognition, taste/smell, ability to concentrate and well, I could list another 200 residuals that encephalitis survivors report, including personality change.
Since hearing about Robin Williams’ death, I’ve been stunned at my reaction. How can I grieve over someone I never knew? I’ve paused to notice the richness he represents in influencing me and how his tragic death shakes me.
Back by popular demand are 5 additional tips for employers whose courage leads them to engaging brain injury survivors in employment opportunities. Ever have a tragic incident in your life and no one calls because they don’t know what to say? Or they assume “everyone else” is there for you, so the phone still doesn’t ring? Many brain injury survivors live this on a daily basis. With these tips, you can make a difference in both their professional and personal lives.
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